Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

Thank you for all your kind words and advice. Showering with the lights off sounds like a really good idea, I’ll get her to try that.

I’ve hidden all the tablets I have at home as she was trying to overdose with Ibuprofen on Christmas Eve and then spent NYE crying because she couldn’t find them.
I don’t think she’s using anything to SH, just opening up wounds that are already there and never heal.

I think also sitting just outside the door will also be of help.

Hopefully she’s coming home again this afternoon for the night so I’ll try these strategies but also will get to pharmacy to stock up on bandages just in case.
I sleep with her (when she does finally sleep) to make sure she’s not wandering around the house and keep her sitting with me as much as I can x

@IWantToBeADCC
I am so sorry for you and your dd. You must have all been terrified. I’m so glad she’s ok and will be thinking about you. Hoping for a peaceful evening for you all.
@JoyousCyanCat
It is so good your dd managed to comply with all the requests to eat. I hope that she continues to do so with the next stage of her recovery.

@IWantToBeADCC DD overdosed a little while ago too. Do you have a safety plan? We have one and part of it is having locked (not hidden) everything away. I got lock boxes of Amazon with number locks. Anything sharp and all meds are locked away. It's a right pain with cooking and giving her the daily meds but we are certain, she won't be able to access them. Also, DD isn't allowed out on her own. She used to by blades (even though she should not be able to by them as she is under 18).

@JoyousCyanCat my daughter spent time at the Arc in April last year. Similarly it was a referral pretty much directly from an A&E visit (C&W) and she started at the Arc a couple of weeks later. It was absolutely exhausting but without a doubt it was the support we needed to understand how to get her eating again. If you can share the days with a partner I would recommend that. My husband spent the Fridays with her. In a few weeks she started to transition back to being in school. Please do message me if you have any questions.

Amazing. Thank you.

Hi everyone, hope you are all ok. Thinking of you @JoyousCyanCat .

Another stressful evening and a lot of self harm. The lights out bath trick was fantastic and we lit some candles, she found it really helpful. It just went wrong afterwards when she promised she could put her pyjamas on in her room and she’d be ok, she wasn’t and was in a bad way.
The rest of the night was better though and we watched a film together until we fell asleep on the sofas downstairs and she slept well.

In the washing machine earlier I found the tiniest blade, I presume it was hidden in a sock and she forgot it was there before giving them to me.

I haven’t said anything as I know she’ll deny all knowledge of it. She used to melt down sharpeners with a lighter so this must have been one she’s had squirrelled away at home. She tells me she’s just scratching herself but I thought there was far too much blood loss for that so at least now I know what it was.

Gosh @IWantToBeADCC, that must be so hard for you. But glad you had a nice evening afterwards and that she slept well.
Good to hear that ‘lights out’ worked. Another tip from the OT was to hold ice to stay grounded and distract from the thoughts/SH. You can buy packs that you scrunch up to activate and she could keep those in her room.

Hello I wondered if anyone has been in a similar situation to ours - my daughter is 20 and was diagnosed with AN in June. First treatment she received from the NHS was an online therapy group for 6 weeks. She's not sure what the next steps will be but she's really keen to regain weight and expand her range of foods in a safe way that she feels in control of. She's very depressed with her body and the constant pain, fatigue and coldness but we can't find support for this bit of her recovery .Has anyone sought dietician's advice privately or independently of what the NHS has offered? Thanks

#Nicolabodeux Its great that your DD is motivated. Tabitha Farrar https://tabithafarrar.com/ is a recovery coach for adults. She normally offers 2 sessions. She has also written some good books and podcasts. Your DD could also look at BEAT which has a number of (free) online support courses, webinars and groups. Good luck.

@Nicolabodeux we have been in your situation. Our DD was offered group therapy online while we waited for outpatient therapy. During that time we sought the advice of a private dietician and also had private therapy. Unfortunately, my daughter although she really wanted to get better, did not want to gain weight and during that time she continued to lose weight. She got blocks of one to one therapy with the NHS But it didn’t help and she sunk further and further into the illness and was discharged a number of times for failure to engage, even though she attended every session. During all of her time with the NHS they never once introduced a meal plan and the first we heard of that was when we put together a private team consisting of a psychiatrist dietician and psychologist. unfortunately, we were not able to restore weight at home and once the weight started to drop off in earnest, we could not stop it even though she was genuinely shocked at this stage. The catalyst for change came because everything hurt and she wanted to get her life back. By that stage the NHS would have offered her a bed but she had lost all faith in them and was hysterical about an inpatient admission. We decided to go privately to a day unit. She made good, albeit slow, progress there and continues to make progress now as an outpatient. Although it is still at a slow rate, she has had periods of relapse where she cannot cope with weight gain but she continues to do the weekly therapy and it really helps. I firmly believe that she will fully recover, but it will take much longer than we thought.

With hindsight we should have sought intensive private treatment earlier. By the time she was sick enough to get intensive treatment on the NHS the illness was deeply entrenched. However, if your daughter is committed to recovery then Tabitha Farrar is a great place to start and she would likely not need the same level of support that my DD needs. Having something she wants more than the ED is essential to keeping her motivated. Good luck. It is hard and not linear but as soon as they commit it becomes much easier. It’s hardest when they are medically compromised and again when we are a few steps ahead of them in recovery.
A good book to read is Skills Based Caring for a Lived One with an Eating Disorder by Janet Treasure.

#Shanghai101 can you share what day centre you used? We need something like this!

Yes, of course. It was Orri. The model seems to be similar to the NHS in that it is based around group therapy but it differs in that it offers 1:1 therapy throughout I.e. they believe in 1:1 therapy even when the brain is compromised due to starvation. It is a slower, gentler journey and seems better suited to those who are neurodivergent. It is very expensive though

#Shanghai101 Thank you - I've looked into Orri and it looks good, but I think they don't take children as young as my dd14.

No. I think 16 and most are older. They may be able to recommend somewhere though

@Minicooper we were never able to use FBT as our DD was older and already had a level of independence. However, if she had been 14, I would have tried FBT and Eva Musby techniques. The Charlie Waller trust is a good place to go for guidance.

Thanks #Shanghai101. Like many with autism/PDA the pressure and demand of FBT is counterproductive and results in her eating nothing at all. We're managing a small breakfast, a tiny lunch and a not bad dinner, but it's incredibly hard work and distressing for all. We've just had nearly 2 months in hospital on an ng tube and unmentionable trauma, so she's terrified off having to go back, but still struggling to eat enough to maintain or gain. Utterly exhausting...

@Nicolabodeux We haven’t used a private therapist or dietician but i wish we had to get help more quickly.

We are thinking of approaching a privste psychologist. Local nhs services said they were reducing their input the day before she was readmitted to hospital. I despair. However, so much depends on the quality of the relationship with the therapist that it was time to try someone new anyhow.

I think beat’s regional helpfinder includes private therapists A relative is with Orri: Good but expensive.

That’s just like us @Minicooper
Jenny Langley does a workshop on autism and EDs. Look on the Charlie Waller trust website for details.
I did it a while ago and from memory she talks about making very small changes. The example she gave was a couple whose dinner time was extending into the night because the wife with an ED ate dinner late. The partner asked if they could eat five minutes earlier and over time they managed to get back to eating at a normal time.
It’s all about seeing what she can tolerate

Also the same with us @Minicooper albeit dd doesn’t have a diagnosis. We are working with a ED coach, who thinks dd likely has both but she has refused to be tested. The coach taught me what she calls modified FBT. Dd only eats at the table in the evening, the rest of the time alone in her room or with friends or out and about. It was very difficult to get her to 3 meals 3 snacks.

Jenny isn’t doing any workshops til April. But the 5 part is also offered by 2/3 other people, details are on the Charlie Waller site.

Hello all.

I'm so sorry for what you are all going through.

Please can I ask any of you for suggestions for our very new situation?

My 14yo DD has struggled with body image for a while and was restricting her eating for a few weeks last year but stopped before we were aware (months later) anything had definitely happened (she was eating normally at home). I took her to the GP at the time but she convinced him all was well, especially she wasn't underweight.

She has been struggling with depression, self harm and suicide ideation but not eating behaviours since then. She has never been underweight.

She is a normal weight and was eating ok until three days ago, when she stopped eating completely.

I have only found out today that this has happened. She has been hiding or throwing food away at school and purging the one meal (at home in the evening) and after school snack that she has eaten.

So far she's said she's not hungry yet, so I'm planning to offer dinner in an hour or so and see what happens. But today she has refused a snack (unlike a couple of days ago) so I think she is going to refuse to eat at all.

She has a CAMHS appointment tomorrow for the ongoing depressionn. I have informed CAMHS and they are going to screen her for an eating disorder.

Screen her?

How do I get them to help me urgently?

Should I be trying to force her to eat tonight?

Sorry to blow in like this. I'm lost.

I don’t think you can or should force her. Is there anything that you could use as motivation. Something that she really enjoys e.g. dance classes, friends.
Stay calm and sympathetic but explain that she has to eat to fuel her body. Play games such as bananagrams or craft immediately after eating to distract her.
She needs to trust that you know what is best for her. My DD is older so I don’t have direct experience with a younger teen but there’s a lot of good advice on here and in previous threads and I’m sure someone else will reply shortly with better advice. Good luck with the appointment tomorrow

Thank you. It's taken hours but she has eaten something.

@nospoonsanymore this sounds very similar to where we were about 10 months ago with our 14 year old. We were referred quickly to CAMHS and got helped by ED clinic (also spent time in a day centre). She will probably need to agree to a high calorie meal plan which will be hard work but necessary. She is hungry but has a voice in her head telling her she is not 'allowed' to eat. I thoroughly recommend the Eva Musby book and YouTube channel.

Thank you. I will look up Eva Musby.
How is your 14yo doing now? (Sorry, this is probably in the thread. I will catch up properly at some point.)

Three days with absolutely no calories, I’d take her to A&E. She needs blood pressure, pulse, blood tests & ECG.